New Trailblazer awardee answers questions about GI and autism

Gastrointestinal (GI) problems affect many children and adolescents with autism spectrum disorders (ASD). Access to rigorously studied treatments for medical conditions such as GI is a major unmet need for families. The Autism Speaks Autism Treatment Network (ATN) provides experts in the care and management of GI problems for these children and engages in clinical research. However, the underlying nature of GI dysfunction in ASD and its relationship to etiology and ASD symptoms are still poorly understood. This information is critical to developing better and more targeted treatments, so both clinical and basic research in this area is needed.

Given the importance this issue, Autism Speaks has recently announced a major Suzanne and Bob Wright Trailblazer Award for research into the biological mechanisms of GI disorders in ASD. (Read a press release about the award). The new study brings together innovative and cutting-edge pilot projects that form a new synergistic and coordinated effort. The connections between irregular bowel movements, gut barrier function, gut bacteria, immune function, and abnormal behavior have as yet not been investigated in ASD. This Trailblazer Study will examine these potential links.

We were privileged to have a chat with one of the key investigators on the study, Dr. Alessio Fasano, pediatric gastroenterologist at the University of Maryland School of Medicine (UMDSOM). He is professor of Pediatrics at UMDSOM and Director of the Center for Celiac Research and for the Mucosal Biology Research Center.

Autism Speaks:How many children with ASD are affected by GIdisorders, and what are the most common problems they suffer from?

Dr. Fasano: The impact of GI problems in children with ASD is difficult to quantify since some of the symptoms, like stomachache or abdominal discomfort, cannot be communicated by nonverbal or minimally verbal children. For this reason, the percentage of ASD children suffering from GI symptoms reported in the literature varies from 9% to 90%. The most common GI symptoms include chronic constipation, stomachaches with or without diarrhea, and underwear soiling. Disturbed sleep patterns and nighttime waking also have been described as possibly secondary symptoms to gastroesophageal reflux (GERD).

Autism Speaks:Why is it important to study GI disorders specifically in children with ASD? Don’t we already know how to treat GI disorders in children?

Dr. Fasano: ASD is comprised of a mixed bag of different cases that share the behavioral description typical of ASD. In other words, ASD might be the “final destination,” but the route to get there can vary from individual to individual. Some children may reach their ASD destination through the “GI route,” meaning that it is possible that their GI disorders can lead to ASD in genetically susceptible individuals. By studying GI disorders specifically in children with ASD, we are not simply trying to develop methods for a better management of GI symptoms. Rather, we have a much more ambitious goal: We are trying to understand the underlying physiology of ASD; we are trying to “walk the same route” that these children took to arrive at their ASD “final destination.” By doing so, we hope to help them turn around and walk back from that ASD destination.

Autism Speaks:Please describe the study briefly in your own words.

Dr. Fasano: We believe that a few things are key ingredients of the ASD recipe: 1) Genetic predisposition (as suggested by twin studies); 2) Environmental triggers (nutrients, metals, additives, oxidants, to name just a few); and 3) An impaired gut barrier (leaky gut). Our studies will attempt to connect the dots among these three elements by 1) establishing whether the composition of intestinal bacteria in children with irregular bowel movements is different in ASD and non-ASD children and 2) whether this difference activates specific metabolic pathways leading to an immune response causing inflammation and, consequently, behavioral changes in genetically susceptible individuals. We will integrate our clinical studies in ASD children with a mouse model of autism, not only to validate our clinical findings but also to explore the possibility of specific interventions to modify the gut bacteria in order to alleviate the ASD-related behavior.

Autism Speaks:If our ultimate goal is to find appropriate treatments for GI disorders in children with ASD, why spend so much effort on studying the biology of the GI dysfunction?

Dr. Fasano: It is my humble opinion that a better understanding of the biology of GI dysfunctions that afflict many ASD children is the key to unbundling the complicated path that brought them to ASD. By answering some of these fundamental questions, we can follow the “bread crumbs” that they left behind during the journey toward their ASD final destination.

Autism Speaks:What are the top three things that we will be able to learn from the study?

Dr. Fasano: We will be able to answer the following three fundamental questions:

Is there a specific composition of “bad bacteria” that can lead to a leaky gut and inflammation, and consequently, to ASD in genetically predisposed children?

If this is the case, do these bad bacteria activate specific metabolic pathways so that we can search for metabolites that can be used as biomarkers (i.e., red flags) indicating that they embarked upon a journey that led to ASD?

Can we manipulate the bacterial composition in the gut of children with GI disorders in order to correct the leaky gut and inflammation (by monitoring the disappearance of the metabolic biomarkers) and consequently, improve their behavior?

Autism Speaks:What are some signs that families and their doctors can look for if they think a child has a GI problem?

Autism Speaks:What can families do now if they think their child has a GI problem?

Dr. Fasano: If GI problems are suspected, families should be referred to a pediatric GI specialist familiar with ASD-related GI disorders. One thing to avoid is undertaking any conventional or unconventional remedy to solve their child’s GI issues without medical advice. Any intervention will complicate the interpretation of the underlying GI problems and, therefore, complicate the proper management needed to alleviate the child’s discomfort.

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Thank you so much to Autism Speaks for funding this important and highly innovative research!

Too many autistic children live with unremitting GI pain. This is unacceptable. So little has been done to address this serious here and now problem. This study will go a long way towards unravelling this problem and providing relief to ASD people living now with GI disease.

Dr. Fasano is a true innovative w/ no conflicts of interest, exactly the kind of researcher we need tackling this problem. Super choice AS!

However, as a mother of a 9 yr old severely affected by GI disease I would warn parents that most pediatric GIs know less about this condition than they should. They will often try to convince you not to try a GF/CF diet- a simple intervention that has helped thousands of “gut” kids. If your pediatric GI is unsure or unhelpful about what to do- or worse- if they suggest anti-psychotics- leave!

The best thing to do is see Dr. Krigsman in Long Island or the doctors at Thoughtful House in Austin TX. If you cannot do that go to a DAN!, AutismOne or NAA conference asap. There you will be able to met all the best ASD GI doctors, attend their presentations and ask a lot of questions. I promise you will learn more about the causes and treatment of ASD/ GI issues than almost anywhere else. I also found it incredibly helpful to meet dozens and dozen of parents of kids just like mine. One parent mentored me more years.

Thank you AS for the funding for this research. I have a 19 yr son who has been battling GI problems for most of his life but more severely in his teen years, yet it seems that doctors in CT where we live have yet to mention that there may be a connection between his ASD and gastro problems. Instead the “experts” keep telling us it is all psychological- just as they were telling kids and families decades ago that the thier behavior disorders were indeed just that-behavioral- and not a ingrained disability! I hope to read and learn more about the connections between ASD and gastro problems and hope to be able to help my son live a healthier life.

Christine

May 1, 2011 at 9:49 pm

There is definitely a connection with GI problems and ADS. My son has had bad bacteria and yeast in his gut and constipation for most of his life. Once we put him the SCD diet, he immediately came out of that fog. He was more aware of his surroundings and of others. His eye contact improved within a few weeks. A few months later he went to SCD diet and has been on it for 4 years. It was the best thing I ever did. He continues to improve and he is very healthy. The only thing that we didn’t test for until now is parasites which he does have. Check out wwww.badbugs.org. The symptoms are close to ASD.

This is wonderful!!!! research, My 14yr old son has Asperger and he has been through every test and medication to determine the cause if his GI problems. His pediatric gastroenterologist(Dr. Stephens; pbpedsgi@bellsouth.net) are completely puzzled!!! My son is sooo desperate to help that he drew this elaborate scene with construction workers, blueprint and all to design a submarine, shrinking machine to go into his tummy and scoop out the bad stuff so he will feel better.He lost 17lbs at the start of this illness, he is 5’9″. My son is such a loving , social, kind young man. I wish I could do more to find a cure for his discomfort. I would love to know more about your research and participate to help others who are suffering. I am a registered nurse, my husband is an architect and our son is the love of our life…I hope Dr. Fasano has great success in her research.

I feel your frustration and your son’s discomfort. I, too, am a mother of a beautiful son challenged with Autism. Although, Colt did not display significant GI problems he did have a distended tummy which went away after a year on a GF/CF diet. That was pretty much the biggest improvement we noticed and after that year we were able to gradually add both some gluten and casein food products back into his diet with no adverse effects.

For the last 4 months we have had my son on a nutritional supplement that is specific to supporting and rejuvenating our mitochondria … (Autism Speaks published a study connecting Autism with dysfunctional mitochondria. I am very proud to say that Colt is showing amazing progress to the tune that we had to re-write his IEP because he has achieved over 70% of his objective goals.

Like you, our son is the love of our life and we will stop at nothing to ensure his future is bright.

As a mom with a child who has suffered a great deal with GI dysfunction, food intolerance, and pain, this is a wonderful thing to see. The hardest part of Autism for us has been watching our son suffer and not being able help him stop the pain. I truly believe that so many of the behaviors we see in our son that are assumed to be caused by Autism are caused by pain and medical issues that have yet to be studied. Thank-you for funding this very important research.

Thank you Dr Fasano for taking on a complex investigation of this issue. Just to reiterate what others are saying, finding GI doctors with experience/willingness to take an unbiased view at our kids’ issues is difficult at best. Dr Buie et al did an outstanding job last year detailing recommendations for the GI doctors to follow for ASD patients; unfortunately, we can only hope that they are reading it and taking it to heart. It will be great if Dr Fasano’s research will give these doctors even more in their toolboxes to diagnose and alleviate the suffering of so many ASD kids with GI issues.

I have a 22 year old son with autism, and he is still on a 2-3 year old level. Although he doesn’t live with us(for many years now), is there anything that could be done to help him? He still wets and soils his pants at will, and runs away from home, among other things. I’m afraid they will put him in an institution!

Hi Debbie,
To ensure your son’s safety, I would certainly invest in a tracking device that can fit wrist or leg, do your research, sometimes personal referrals will get you intouch with a group that will meet his special needs.

OMGOSH!!!!!!!!!! My son Corey who has ASD also has these symptons. We have been struggling for YEARS to find answers to why he has such large stool and why he continues to soil his underwear even at the age of 7years! THANK YOU FOR THIS STUDY, I WOULD LOVE SOME ANSWERS OR SOLUTIONS! AWESOME!!!!!!!!!!

Prebiotics and probiotics have helped my little guy with autism tremendously. I highly recommend supplements such as Florastor and Baby’s Jarro-Dophilus to combat the intestinal imbalance of bacteria that leads to chronic diarrhea in our little ones with ASD. The unexpected side effect: a reduction of sensory-seeking behaviors and better sleep at night! Absolutely thrilled to hear that Autism Speaks is prioritizing helping the scientific community to move toward a better understanding of GI issues in ASD kids. I can’t wait to read the results of this research. It has the potential to help so many children!

Thank you God! My son has been suffering for nine years with numerous trips to GI. Despite extensive intervention he continues to be in agony daily. I too applaud Dr. Buie’s paper and hope that this research will shed light and hope on how to resolve the pain.

Wow. I knew people with Autism Spectrum Disorders were prone to some health issues but never did I know GI issues was one of them. Coincidentally for the last few years I have had some very serious GI problems which two Gastroenterologists and a handful of PCP’s have never been able to fully diagnose.

Although this post specifies Children and Adolecents with ASD’s I’m sure some of the GI issues must carry on to adults with ASD’s. I have Aspergers Syndrome and am a advocate for people with ASD’s

I would love to have my Grandson in the study!
Non Verbal Autistic boy compounded with Russell Silver Syndrome ( Many GI issues and struggles with getting him to eat and is now on a Feeding tube)
I would love to know if the reason he will not eat sometime because he is in pain and just to full. He also had surgery for Melrotation (SP)? When he was 6 month old. Currently he is in the hospital to have sonogram or some type of scan of his GI to be sure there is no obstruction. 4/15/2011

My non-verbal son is 5 has PDD-NOS and short bowel as well. He suffers from GERD, constipation, vomiting turned rumination and ect ect ect. You can see the pain in his eyes and things are getting worse the older he gets. We have see GI after GI and all seem to have no consideration to perhaps a connection. We have tried to wean him off of dairy and even attempted the GFCF diet but with his sensory issues and OCD with the limited food he eats, its been a huge struggle.

We need all the research we can get to help these kids! I am sure I speak for a lot of parents out there, that we are not giving up or giving in… we need some answers!

Vivian Shakir :This is wonderful!!!! research, My 14yr old son has Asperger and he has been through every test and medication to determine the cause if his GI problems. His pediatric gastroenterologist(Dr. Stephens; pbpedsgi@bellsouth.net) are completely puzzled!!! My son is sooo desperate to help that he drew this elaborate scene with construction workers, blueprint and all to design a submarine, shrinking machine to go into his tummy and scoop out the bad stuff so he will feel better.He lost 17lbs at the start of this illness, he is 5’9″. My son is such a loving , social, kind young man. I wish I could do more to find a cure for his discomfort. I would love to know more about your research and participate to help others who are suffering. I am a registered nurse, my husband is an architect and our son is the love of our life…I hope Dr. Fasano has great success in her research.
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My 5 grandson, who has autism and is non-verbal, refused to eat or drink anything for a month about a year ago. Since he can’t speak, we had no idea what was wrong with him. No amount of prompting would get him to eat or drink. He spent two weeks in the hospital having a gazillion tests done on him with no results. Doctors decided that the only way to keep him alive at that point was to insert a feeding tube in to his stomach. Thankfully, he decided to begin eating after a month of refusing to let anything pass by his lips. He was put on an antacid medicine and has been eating and drinking ever since. We keep our fingers crossed though.

I have participated in the Autism Speaks walk in my area for the last two years to help raise the public’s awareness about autism and help support the kind of research that is so desperately needed to help those with Autism. I couldn’t be happier about this research! Thank you Autism Speaks for supporting such an important aspect of Autism!

This is a wonderful news!I pray that this research will bring answers to such difficult problem to treat. My son is 10 years old and has autism. His GI problems, since very early on, 1 year old, are severe, alternating between constipation/diarrhea(overflow), bloating/discomfort/pain, distend colon, protruding stomach, soiling pants, terrible sleeping, non-compliance, worsening of meltdowns/tantrums over things that he usually no longer would react. My former pediatrician was no help. He didn’t have the knowledge or the interest to have an open mind to learn and inform me of the reality and how serious my son’s GI problems was; he is a doctor from the old school. So years down the road, after seeing a second GI doctor, going on a third one at Children National Medical Center in Wash.,DC we are still dealing with the same issues.
I must say that in April of 2010 our GI doctor put our son in this regiment to help w/the constipation (he had and still has total control of when he goes) that worked so well for 9 months! I was in heaven! He had a BM everyday but still had occasional leakage. The doc. was sympathetic, nice and got it right but didn’t have a lot knowledge about ASD and GI connection so she couldn’t guide to the next step. In August of 2010, I got a wonderful grant to start behavioral therapy (ABA)to address the bathroom issues/meltdowns; very intense and consistent approach. Both combined we had a huge success! That was then that I learned about ENCOPRESIS, which is the ability to hold BMs and urination. There are protocols being used to treat and there is lots and lots information on the net about that. It affects typical children and teenagers as well. We started to treat anxiety also a few months earlier as well with very good results.(GF/CF diet did not help my son but it was worthed to try). Biomedical treatment also being used.
It was a lot going on, too much. All was going well. He was feeling better, less meltdowns, being able to initiate and independently start to use the bathroom and definitely had less leakage. It was incredible. As of 2 months ago things have change and we had a set back.I have been working very hard to get him back on track but it has not been easy. Just last month he got so back up (confirmed in the X-ray) that he had to have a enema. He felt so much much, his mood changed the next day, in every aspect of it. It’s better now somewhat but more work and new plan of action will have to be implemented.
I worry so much about him, his autism, his GI problems. He has a wonderful nature, happy, loves to sing and play with his little brother. But when he is in pain/discomfort it totally affects his behavior at home, at school, it doesn’t matter where, fine and gross skills, attention spam, sensory issues.

I am really excited about this research and I like to thank Autism Speaks for its support and initiative . We need help, our babies need help.

Dr Fasano I do not agree with you, the statement that you used: ASD might be the “final destination,” but the route to get there can vary from individual to individual. ASD is not too far to have a cure. I am a mother of a child with PDD NOS and I am very hopeful. And it is a sure that any GI problem has to be taking care, it is means a child with ASD or not.

I am the Nana and legal guardain of my 13 yr. old Grandson ( Robert ) young man of Autism. For the past year we have been battling GI issues, we live near Dallas, Texas so Robert is at Childrens Hosp. in dallas for allot of his needs. Robert has been Diagnosed with Cystic Fifrosis of the Digestive system , we were told this past Nov. 2010. But he is not showing allthe signs. ossitive Sweat Chholride but Negative DNA. and he has Pangreatitis ???? We need help , he is on Enzyms now 6 a Day. Does anyone have these issues as well. Robert has AUTISM- Mild to Moderate, RED EAR SYNDROME ,,, CF of Digestive System. As he gets older things are coming up.
not sure what to do or where to go I am so confused.
NANA & Robert

Forgot a few ,,, Robert started with stomach pain this is where this all started. From there it was all GI testing , colonoscopy, endonoscopy, video swallow,CT with and without contrst,sonagram, labs , and then the Possitive Sweat Chhoride , Negative DNA , but we are still told and he is stii be treated for CF. I just don’t understand, if there is any testing or studies I would be glad to do this with Robert after reading and understanding more. We spend so much time in and out of Dr.s visits that school as become secondary . Robert does have the best as far as Childrens in Dallas and Scottish Rite Hosp. we carry insurance on him as well but I have been told so many times that he is just a Mystery and they keep trying but my concern is that Autism is not their feild ,, and many have no idea… Please HELP US…… Nana Kathy Williams ;-)

You can find a DAN doctor. Also I am a FIRM believer in the GF/CF diet. Read up on GFCFdiet.com and Pecanbread.com. If he is CF he may benifit from GF as well, as they memic each other and if someone has prolems with one they often have problems with the other. Going GF sounds hard but it isn’t. Once my son is 9 yrs old and ASD. When he went GF/CF we had a differnt child in 3 DAYS!! After finding a nutritionist and starting suppliments he started improving more. He took them for 6 months and was SO much better. Here we are 6 years later and he is healthy! No more GI problems.

This is so awesome! I have been a long believer that GI issues have really gone hand in hand with my sons Autism.Ever since he was a small baby as he has always had GI issues and motor skill issues. I have also found that every person who has a child with Autism that I have met has dealt with GI issues.

I am glad Autism Speaks is funding research that will follow the lead of the pioneering research of brave medical doctors like Arthur Krigsman and Andrew Wakefield. They have already helped so many children because they explored areas ignored by others, to their own detriment.

Any research of GI dysfunction in “autism” stands on the shoulders of the work of Wakefield and Krigsman. It is to the shame of established medicine and public health – and to the U.S. government, specifically HHS, that Wakefield and Krigsman have been punished for their valiant efforts.

This is great! My granddaughter (11) is always wanting to eat & is becoming very heavy.
She also chews on every thing & is a nose picker, no wonder she picks up GI bugs.
Our Hannah is a darling girl & anything that can make her life eaiser is wonderful.

Our 3 yr old son has just been diagnosed with ASD. He has had constipation problems for the past year and the Dr.s Don’t take us seriously. His stomach is huge, even though he is skinny, he has cronic bloating with belly aches. Just tonight he had a belly ache and 1 hour meltdown. Any suggestions of ideas would be appreciated.

From what I have learned I would say something he is eatting is doing this to him. An easy thing to do is get a blood allergy test. Not a skin prick. It will tell you what he is allergic too. My son has some food allergies but not bad enough to present like an allergy. He doesn’t swell up, turn red. He has BAD tummy aches. Please look up GFCFdiet.com & Pecanbread.com
Think about if you had a bad belly ache, you would have a meltdown too. Moms know best!

I am so pleased that people care about this problem.. I have a question for anyone who can help me understand more. I have a 9 year old who is on the autism spectrum and he has been throwing up everything that he eats and drinks and this is major consern of mine because it can cause alot of damage to his insides and his health. The GI I use is at a lose to we can not figure this one out. Has anyone ever had a issue like this I mean it can be something so small like water and he throws it up. This has been going on for just under 2 months and I really just want him back to himself again. Also he has frequent urination like every 5 minutes and we have checked everything we can there to.. Please any ideas or help is greatly appreciated. Thank you so much For Team Critter Bugs Mom

The poor little guy. Keep going to different doctors or find a DAN doctor that speciaizes in children on the spectrum. Have you tried any of the parenting boards on line? I joined ones on AOL and Yahoo. Talking to other parents I learned more than any doctor was ever able to tell me. Good luck and prayers!

Have you considered parasites? Dr Hulda Clark says microscopic parasites are behind every disease, but we Americans do not like to think about that. There are drops at good health food stores containing black walnut tincture, wormwood and cloves, if you are interested. Good luck.
Theresa

So glad about this!
After my grandson was diagnosed at age 3, I began an intensive research, believing understanding autism it in it’s complexity, would allow me to best help my grand-son.
He is now 10 and in main stream education.
Several years into my research I read about the relation of GI problems. It hit home because my grandson would say his bones hurt when he had a bowel movement. (And they were and still are very large) This also caused him to hold it which subsequentally caused him to become impacted. I had read in the past that Ebson Salt was a laxative and began having him soak in a warm tub with several cups of the salt in the water. It worked!!! And over time all his system needed for a signal to have a bowel movement was to turn the bath water on!
We stay consistant with lots of liquids and unprocessed foods and such, and track his bowel movement so that he does not get impacted.
Another way we knew he had become impacted was that he stopped eating!
I am so glad there is a closer look at this issue!

I diagnosed my son as having leaky gut 6 years ago. The GI doctors I went to told me I was crazy and there was nothing wrong with my son. HA! I laugh in their face!He had cronic loose stools from birth, dark circles under his eyes and at 2 years of age he food was not being digested. Through all my research, talking to other parents I put him on the GF/CF diet I had a differnt child in 3 DAYS! Then I found a Nutritionist and we put him on suppliments to heal his gut. Here we are today, 6 years later and I have a HEALTHY little boy that is thriving!
This study will be HUGE! Thank you! Thank you! Thank you!

Forgot to mention more about my son. He is 9 years old. ASD, SPD. After starting the GF/CF diet his symptoms began to improve. His sensory issues are now minimal. His GI issues are gone unless he eats something off his diet. He went from Non-verbal at age 3 to being mainstreamed at age 6!

To critter bugs mom. My 22year old daughter has aspergers. She also has suffered greatly with gi issues,including spontanious regergitation of her food. I have seen it. She is frequently hungry but cannot keep her food down. Has sever stomach aches and bloating. Irregular bowel movements and constipation. We have discovered that she has certain food allergies due to process of eliminatio. Including two mysterious trips to the hospital for anaphylactic shock. One thing that has helped is probiotics and zantac. But it is an on going battle and we have tried GF/CF diet w some success. Don’t give up!! There is a link. I pray they find it soon! I feel so bad for our precious children.

Thank You so much for the information i have an eight year old daughter with Autism and she has chronic constipation despite the fact that she is taking medicines to help with the condition i need as much knowledge as possible she has been suffering with GI issues all of her life!!!

Very helpful post… thank you so much for sharing this important information. The study is very helpful for ASD sufferers with GI problems. The result of this study can also be useful in managing ASD patients to reduce their GI problems. Great Job! Melanie.

I am also glad to see that there may be help with GI issues and ASD,, my Grandson has GI problems and was just diagnosed with CF of digestive System, and takes 9 enzymes a day for the problems, never heard of until 12-2010 when we where told, He is a young man ( 13 ) of autism bit we have spend so much time trying to find answers , we still don’t have and don’t really understand most of it. We have been raising him from age of 3 yrs. Parents are not around so all is so over whelming, with Medical issues. He has autism , Red Ear Syndrome. Migraines, and now CF… We do live in the Dallas Area so we are getting the best Children’s Hosp. and Scottish Rite. But just so many unanswered questions.

Great interview! ASD kids need diet modification to help with their digestive problems. The SCD diet has been proven to help kids over and over again, and I would urge any parents out there who have not seen great success with GFCF or Gaps to try SCD. I wrote a book on how to do it correctly and give away a free chapter on how to get started right away. I hear from parents every week how much better their kids behave and learn once they get started.